Tuesday, May 25, 2010

The DVD of "Extradorinary Measures," starring Harrison Ford and Brendan Fraser, was recently released in Taiwan, where one of the several real-life heroes of the true life story, Dr Chen Yuan-tsong, who is completly left out of the movie and played instead by Harrison Ford, lives and works. The movie is medical drama about a desperate father who finances a cure for the rare Pompe disease that is killing his children.

The movie is based on the true story chronicled in the book ''The Cure: How a Father Raised $100 Million and Bucked the Medical Establishment in a Quest to Save His Children'' wrtitten by Indian journalist by Geeta Anand now based in Mumbai. There is a real John Crowley who really did start a biomedical company to develop a cure for Pompe disease.

But the real guy who developed the cure was not a fictitious Hollywood-arc ''Dr. Robert Stonehill'', played by Ford in the January 2010 relased movie. The real guys were named Drs Canfield, Chen, Byrne and Landy, among others. And don't forget that female scientist at Duke University, too.

We learned this from Roger Ebert's movie review back in January:

"Dr. Robert Stonehill doesn't exist in real life. The Pompe cure was developed by Dr. Yuan-Tsong Chen and his colleagues while he was at Duke University. He is now director of the Institute of Biomedical Science in Taiwan. Harrison Ford, as this film's executive producer, perhaps saw Stonehill as a plum role for himself; a rewrite was necessary because he couldn't very well play Dr. Chen. The real Chen, a Taiwan University graduate, worked his way up at Duke from a residency to professor and chief of medical genetics at the Duke University Medical Center. He has been mentioned as a Nobel candidate."Ebert also speculates that Dr. Chen and the others mentioned above might have been inspired a more interesting character than ''Dr. Stonehill''. But I suppose Harrison Ford, who also serves as the film's executive producer, isn't the first guy that comes to mind for the role of "Taiwanese Scientist." Thus, the rewrite. Ah, what could've been, said Angry Asian Man on his blog last year.
Despite the big name stars, the movie looks like a glorified made-for-Lifetime movie... where maybe it could've starred, um, Tzi Ma or somebody as Dr. Chen, Angry Asian Man added.

In Taiwan, The CNA news agency, reports on May 25 on the brewing brouhaha:

"Extraordinary Measures” tells the story of parents who formed a biotechnology company to develop a drug that could save the lives of their young children, who have the life-threatening rare Pompe disease. In the movie, based on the book “The Cure,” Harrison Ford plays research scientist Robert Stonehill, who was instrumental in finding the cure, and Brendan Fraser plays John Crowley, the man who raised US$100 million to buck the medical establishment.

John Crowley really is the name of the person who started the biomedical company, but the real Dr. Stonehill who developed the cure is in fact Dr. Yuan-tsong Chen, director of Academia Sinica's Institute of Biomedical Sciences.

Chen was present Monday May 24, 2010 at a news conference held by the Taiwan Foundation for Rare Disorders to mark the debut in Taiwan of the movie's DVD ...and .....he indicated he had mixed feelings watching the movie.

Chen said he began researching a cure for Pompe disease in 1991 after being saddened by the passing of many young lives from the affliction.

“Before I knew it, it had been 15 years,” he said.

“It also surprised me that Hollywood would have made a motion picture out of it, making it a second movie about rare diseases and patients, after Lorenzo's Oil,” he said.

Movie critic Roger Ebert suggested that Harrison Ford, as the film's executive producer, perhaps saw Stonehill as a plum role for himself and ordered a rewrite because he could not play Chen very well.

Regardless of how Hollywood decided to recast Chen, his contribution to helping find the cure is well established.

He developed the treatment with colleagues at the Duke University Medical Center. His R&D was mostly done in the United States, but Chen conducted his clinical trials for the cure — later named Myozyme — in Taiwan, at National Taiwan University Hospital.

Myozyme, which took Chen and his team 15 years to research and develop, was introduced in Taiwan by U.S. pharmaceutical company Genzyme and included as a drug covered by Taiwan's national health insurance (NHI) program in 2005, the foundation said.

Myozyme was sold in Europe and the United States after it was approved by the U.S. FDA and the EU health authority in 2006. It has contributed to saving the lives of over 1,000 patients with Pompe disease, or acid maltase deficiency, worldwide each year, including 34 in Taiwan.

Young Pompe disease sufferers have symptoms similar to muscular dystrophy, the foundation said.

Without a cure, most children with Pompe disease would die before age 2. There is also a juvenile and adult form of the disease that can appear at almost any age, according to the foundation.

Currently, the Pompe disease patients in Taiwan are being given Myozyme and related medical care worth NT$7.9 million (US$245,577) per patient per year under the NHI program, greatly reducing their families' financial burden, the foundation said.

The foundation quoted tallies from the Cabinet-level Department of Health as indicating that there are nearly 6,000 families with rare disease patients in Taiwan, but over 70 percent of them do not have effective drugs or therapies that can help them, the foundation said.

.......Now, following the DVD release in Taiwan and the "mixed feelings" expressed by Dr Chen ...comes a public campaign by a lone American blogger in Taiwan to ask Ford to fess up to why he changed the movie and yellowwashed Dr Chen out of the entire picture, along with the other real-life scientists who were whitewashed out, too.
Danny Bloom, a 61 year old Internet campaigner for better Hollywood movies, writes this letter to the editor addressed to all the major newspapers in Taiwan today (late May 2010). He calls it an "open letter to Harrison Ford" and it goes like this:

Dear Harrison Ford,

As one of the great actors of the 20th century (and maybe the 21st
century as well), you are very much admired by film-goers in Taiwan
and all of Asia -- im fact, all over the world. However, in a movie
released earlier this year titled "Extraordinary Measures," based on
a book titled "The Cure," you inexplicably cast yourself as a medical practioner who comes up
with a cure for the rare Pompe disease. In the script and in the
movie, however, you changed the names and nationality of the real
people who
came up with the cure -- Dr Yuan-tsong Chen of Taiwan, among them -- into an eccentric yet lovable American research scientist named "Robert Stonehill."

By the way, Mr Ford. I saw the movie today on DVD and I loved it. The movie is great! It gets the word out about Pompe, so bravo!

However, Harrison Ford, you need to explain yourself. Sure, movies are movies,
and Hollywood is Hollywood. But to take the real-life medical work
of several scientists and a research team at Duke University and turn it into a medical thriller
that is not really "true" in terms of what really went down is what Hollywood is all about.

I am sure you had the best of intentions, and I am sure you are a nice
guy, and I am sure you respect Dr Chen ane the other players here for their real-life work that
made
your movie possible,
but do you have anything to say for yourself, now that you know that
some of the players have said they areambivalent about the movie you made of their lives? Dr Chen, among others,
recently
told the media in Taiwan that he had "mixed feelings" about seeing the
movie after its DVD release in Taiwan, although he did say he also loved the movie and felt it is an important and vital one and he is glad you made it.

I am sure the editors of this newspaper or blog will give you space on this
page to answer my letter to you -- in your own words.

28 comments:

The Extraordinary Measures film opened last week and film critic Roger Ebert weighs in on the casting. As it turns out, Harrison Ford’s character is based on Dr. Yuan-Tsong Chen.

In his review, Mr. Ebert writes:

Dr. Robert Stonehill doesn’t exist in real life. The Pompe cure was developed by Dr. Yuan-Tsong Chen and his colleagues while he was at Duke University. [...] Harrison Ford, as this film’s executive producer, perhaps saw Stonehill as a plum role for himself; a rewrite was necessary because [Ford] couldn’t very well play Dr. Chen. The real Chen, a Taiwan University graduate, worked his way up at Duke from a residency to professor and chief of medical genetics at the Duke University Medical Center. [Chen] has been mentioned as a Nobel candidate.

The casting of Harrison Ford may be seen as a necessary business decision, as the use of a huge star that audiences can relate to is a must for Hollywood films. This is reflected in the absolutely abysmal opening ticket sales for the film, which opened against a blockbuster you may have heard of, featuring much more relatable giant blue alien cats.

And of course, going with a known actor guarantees that you’ve chosen the best possible performer for the role, as Mr. Ebert describes:

I suspect Dr. Chen might have inspired a more interesting character than “Dr. Stonehill.” The Nebraskan seems inspired more by Harrison Ford’s image and range. He plays the doctor using only a few spare parts off the shelf. (1) He likes to crank up rock music while he works. (2) He doesn’t return messages. (3) He’s so feckless he accidentally hangs up on Crowley by pulling the phone off his desk. (4) He likes to drink beer from longneck bottles in a honky-tonk bar and flirt with the waitress. (5) “I’m a scientist, not a doctor,” he says. [...]

This becomes tiresome.

[...] Ford is given no lines that suggest depth of character, only gruffness that gradually mellows.

Another in long line of films that favor the replacement of an Asian or Asian American face with a Caucasian one. Whether a fictional world populated by people of color or real men and women, Hollywood embraces “whiter” retellings and re-imaginings.

As is usually the case, there is little malice involved here – just a system that is tilted in favor of Caucasians (established or not), and the sum of small choices that converge on the whitewashing of an originally Asian person. There is no one individual to point to here as an “instigator” of this whitewashing; but it is a reminder that Asians and Asian Americans are not permitted to portray themselves, much less others.

Please be sure to check out Mr. Ebert’s full review here. Special thanks to Angry Asian Man for breaking the news to all the blogs.

We blogged about Extraordinary Measures when the film came out in the United States. You can read the article here. We were surprised to hear that Dr. Chen commented on the depiction of him in the movie. I was wondering if you have seen any articles in the Taiwanese media where Dr. Chen is directly quoted with his thoughts on the movie. That would be interesting to share with our readers. It's okay if the article is in Chinese; I can read Chinese and translate it to English for our readers.

We're currently focused on fighting the casting of The Last Airbender, which comes out in a matter of weeks, so we won't be able to help you with your endeavor. We look forward to reading what you come up with when you're finished, though. Thanks!

What the movie failed to show was who actually developed the drug that Megan and Patrick eventually received. There are many scientists behind the scene to make this happens. The movie however, did hint that it is not the drug Dr. Stonehill developed.

In a way, I still appreciate Harrison Ford in taking the Pompe story to a movie. This brings the public awareness of rare devastating diseases such as Pompe. Hopefully, there will be more support for helping these patients and families.

Thanks for your note. I will call you around noon tomorrow. Thank you sir.

I saw the DVD today at my home, and I LOVED IT,,,the movie is very well done, yes !!! and like you said, it is a chanceto teach the public about Pompe disease and how difficult research is and how business and reserarch must come togetherto fund future research,....so all in all, the movie IS GREAT.........i was crying about half the time while watching the movie,tears of empathy and tears of mother father love for their children and tears for the trials and ups and downs of the reseacher,,,,,the movie is fantastic.......BUT......I do not understand why the movie makers could not say at the beginning of the movie, in the opening credits, or at the end , in the ending credits.....after the place where the movie makers write "INSPIRED BY TRUE EVENTS" -- the movie could have added "Based on research by Dr YT Chen" or after the words "Based on THE CURE by Geeta Anand" and then ADD, "Based on Pompe disease research by Dr YT Chen in the 1990s"..........-- at least just add those words......a shame really, that the movie makers did not THINK about that........le'ts chat tomorrow....... i just wanted to tell you i saw the movie today, and LOVED it, was touched and moved, both as human being and journalist and doctor's son ANd heart attack patient myself, 6 days in ICU in Chiayi last year......61 years old me......SMILE....so those ICU scenes in the movie touched me...

STill, I can't believe they did not mention YOu at all......poor Hollywood, they are so stupid sometimes.....

Danny ....hey, movies are NOT history, especially, the historical ones. They can't be, Characters are minimized or dropped altogether to satisfy narrative, time and complexity requirerments. And these days of always independent movie making means you ALWAYS have to begin with a bankable big star, (no studio to take up the slack). and the story is ... See Morefitted to them. There's also running time, rarely can it go over two hours, both for people's attention span, and fitting an extra showing in for the distributors to use as a selling point for the exhibitors. So really--don't even think about verisimiltitude when watch historically-based films. You'll always be disapointed. Notice that they ALWAYS say, "inspired by a true story" or "based on a true story". Which is to say, it's not a true story itself--not any more. The investments are in the many many millions, so all efforts are taken to be sure it will be successful with millions riding on the outcome. That means--change the' facts' when needed, add or delete characters to keep the storyline direct and running smoothly; They used to do this less--but they've always done it when needed. The studio system could take a risk--now and then "The Life of Pasteuer",say--but it was waways dumbed down. Even Anne Frank's diary left out 90% of what was in the book--and the book was expurgated itself until recently. It's the old jounalistic byword' "When the truth and legend conflict--print the legend." All movie-making is legend-making.

SWW, re your movie Hwood analysis, above, spot on, right on, well said. and i agree! I did see the DVD of the Ford movie today, rented it this afternoon and watched it at home, lying on my bed on my back, head propped on pillow, lazy man's way to watch movies, and WOW, the movie TO ME was really really GOOD! Ford was brialliant in this movie, really., ... See MoreFraser was also perfect. The little girl was wonderful! Excellent fucking movie, YES YES YES........and of course, for star bankable audience they had to sex it up with Ford as white guy scientist and i loved his role...he played it well.....and the theme of movie is very touching, you got kids, go see this movie, rent the DVD.,....it is worth it...BUT THAT SAId, re my open letter to Ford still stands, why couldn;t the producers in the opening credits at least have written after they Did write "inspired by true events" -- and "based on THE CURE by Geeta Anand" -- why could they have not have added: "The original research for the Pompe disesase cure was conducted by Taiwanese medical researcher Dr YT Chen in the 1990s while working at Duke University" -- what would hvae been the HARM in adding that to either opening credits or ending credits , but NO,,,,,nothing, NADA......and this guy is said to be up for a NOBEL for his work on Pompe,,,,i am interview Dr Chen tomorrow at noon, will report back then......So my open letter to Ford still stands...SCHMUCK!

I wrote to Roger Ebert again today in Chicago via his blog re the movie and said to him this and he replied in *** at end:

Thanks Roger for quick feedback on the extraordinary measures Ford took to get his movie made. I spoke with Dr Chen today by phone in Taipei. He is both happy the movie got out, so people can see news about the research and it can help patients and families, and he also feels like why did Ford leave Dr Chen completely out of the picture. Of course, it's too late now. Movie out out, DVD now too. But I want to raise a protest and get Mr Ford to at least publicly answer the question: why did he do it and how does he feel now that Dr Chen says he has mixed feelings seeing the DVD in Taiwan. Any chance of my getting Ford to respond publicly? Your advice. How to raise a ruckus? Or should I just crawl back into my cave in South Taiwan and call it a day? No way! I am a fighter for truth and justice? Neil Steinberg in Chicago Sun Times my mentor! Mike Royko, too!

YT Chen is a wonderful doctor and was an essential and passionate researcher in Pompe disease for years. He was one of several tremendous doctors that we worked with in advancing the therapy for Pompe. I did not, of course, start a company with Dr. Chen. The Dr. Stonehill character in Extraordinary Measures is a composite of several of the great doctors and researchers that we worked with, each of whom contributed immensely in moving science toward a treatment for this horrible disease. We are indebted to YT Chen and so many others.

Thanks, Dan, I know Dr. Chen was very involved with the development of Pompe disease treatments and I'd be happy to speak to him on background, but not for a story right now. I wrote about the movie when it came out so wouldn't want to revisit it. If you would like to pass on his details I will keep him in my contacts folder to call next time I write something on Pompe disease.

"Before testing the drug in human Pompe patients, it is important to see if the drug works in animal model of Pompe disease.

Two anuimal models were available at the time when we were ready to test our drug (~1994), the cattle, the quail. We chose to use quail because of smaller size. Around 1996-7, we already got very exciting results that we can correct the glycogen storage and muscle weakness in the disease birds. But not until 1999 we had enough clinical grade drug to test that in human."

Thanks for sending me your blog and review. I'm always glad to see peopletaking an interest in Pompe disease, and I too think that YT Chen is agood guy.

However he did not develop the treatment for Pompe disease. He playedan important role and I think I bring that out in my blog. However heis not the basis for Dr Stonehill - that is very much William Canfieldand recognisably so - although that work didn't actually lead to thetreatment.

The pioneering work was all done in the Netherlands by the team atErasmus University. Hopefully it's all clear from the blog but happyto answer any questions you might have on it.

Danny, this kind of thing isn't that uncommon, unfortunately. re your letter to Ford and that movie EM..... Remember the case of the movie U-571 (2000)? In that movie the British navy's capture of a German enigma machine (which actually happened some months before the USA entered WWII) was mysteriously rewritten so that the feat was accomplished by Americans. The real sumariners who took part felt ambivalent about that, too. Cherchez le cheque book, as usual.

I've often wondered how it would go down if the boot were put on the other foot... http://steepholm.livejournal.com/29104.html.

On April 28, 2006 Chen Yuan-tsong, director of the Institute ofBiomedical Sciences at Academia Sinica, finally saw his efforts of 15years bear fruit. Myozyme, a drug he had developed for treating Pompedisease, was simultaneously approved for sale by the US Food and DrugAdministration and the European Medicines Agency.

Henceforth, the more than 1000 infants born worldwide every year withPompe disease will no longer face the prospect of death beforereaching their first birthdays for lack a treatment for the condition.

The approvals are not only good news for Pompe disease patients, butalso represent a major achievement for Taiwan's biomedicalresearchers. How did Chen accomplish what he did? What unknowntravails did the process entail?

Once Myozyme was approved for sale, more than 100 related news reports.....

In a letter to the New York Times a week after the aticle came out, 1999,Dr Chen, who was still working at Duke University in North Carolinam,wrote:

"As a physician who specializes in Pompe disease, I have beenhelpless in preventing the death of many babies who are born with thisdeadly disorder. So I thoroughly understand, and share, the grief thatEric Godek's parents feel in not being able to enroll their son in ourtiny clinical trial testing an experimental therapy long in the makingat Duke. The decision not to enroll Eric had to be made because hisinclusion could have resulted in a critical shortage of the drug forthe babies already enrolled and being treated. The trial was designedfor three patients because we have only a small amount of therecombinant protein, which took more than two years to produce.Because it has never been used in humans, we didn't (and still don't)know how much of the drug these children will ultimately need, basedon how long they live and whether complications arise. We can onlyhope that the trial will prove successful and that in the future,children can be saved and their families can be spared the pain oflosing a loved one to this dread disease.

Jeffrey Chen, a nephew of Chen who lives in California, is proud ofhis uncle and wrote a film review of the Harrison Ford movie when itcame out in the U.S.

"It's important, I feel, to create publicity for the idea of placingmore truth in movies. However, I think that some facts about themovie and my uncle's role in the backstory, need to be straightenedout, in general. To say that Harrison Ford plays a scientist who wasin reality Dr. Y.T. Chen, my uncle, is a bit inaccurate.

"In doing research for my film review of the Ford movie, I discoveredthat the story of the search for the cure for Pompe disease is asprawling epic, and to give my uncle the main credit would be a bitmisleading -- the research was begun in the 1990s by Dutch scientists,Arnold Reuser and Ans van der Ploeg at Erasmus University inRotterdam. Dr. Chen's work at Duke ran concurrent to their ongoingwork, so effectively there were two fronts fighting against thisdisease. A biotech company called Genzyme eventually got involved andhelped fund the clinical trials in both fronts of the study; using allthe information gathered, they engineered a medicine called Myozymethat successfully counteracts the effects of Pompe disease.

In the movie, "Dr. Stonehill"'s research doesn't even win out --Genzyme (renamed Zymagen in the movie) ran a trial to allow fourdifferent possible solutions to compete, and then selected the bestone to be developed into Myozyme. The one that is chosen is notStonehill's (or, in real life, Novazyme's). Essentially, then,Crowley's story is really a side story to the progress of Pompe'scure. All the "good stuff," for lack of a better way of putting it,including the work of Dr. Chen and Duke, happened outside of Crowley'sefforts. This is actually summarized pretty well by this blog byKevin O'Donnell: http://pompestory.blogspot.com/ . In it, he writes:

"I have to confess that this blog is also, in part, a reaction toGeeta Anand's book, The Cure, soon to be the basis for a Hollywoodfilm. It's not a bad book. It's the inspiring story of one man, JohnCrowley, whom I rather like and admire. What it is not is the story ofthe development of a treatment for Pompe disease. In fact, in thatrespect, the book is akin to reading a history of World War 2, toldentirely from the perspective of Switzerland: "Skiing good. Apparentlythe neighbours are fighting about something or other. Mostimportantly, we have invented Toblerone!" "

I don't think Harrison Ford should be taken to task for changing aChinese man into a white man, because that's not what happened. Fordand company just wanted to tell an inspiring story about how a fatherwould not stand by to watch his children die, not when he felt hecould do something about it. That story is admirable, but the badside effect if that the story doesn't address the details about wherethe actual treatment -- the treatment administered to his children --came from. There's a bit of injustice there, sure, because importantwork done by real people should deserve public credit, but it's not asegregiously racist as we may have been lead to believe :-)

Even if there was a rewrite of the actual story and characters of the real scientist and his team were changed to fit Harrison Ford's character, at LEAST in the ending of the story---Mention and give credit to the actual people who actually worked to cure Pompe Disease. ALso in the DVD and BLURAY, mention the true scientists behind the cure of Pompe disease!